Wednesday, April 29, 2009

At least for the time being, until this whole swine flu blows out. We're just pretending it's November, and this is ordinary lockdown--just avoiding the flu. I personally think that the next time there is a threatened pandemic that it should at least do us the courtesy of manifesting itself in normal flu season and not cut into my precious summer!!

All joking aside, though, we are truly sorry for those who have been affected by this illness, especially the family of the little one who passed yesterday. Everyone stay healthy, ok?

Friday, April 24, 2009

Thankfully, Dakin seems to be all better this morning...hurrah. We did get a prescription for some Tobi (nebulizer antibiotic) just in case he starts up with gross secretions this weekend, but at this point he's looking good. His temp would just not come down all the way--his night nurse called me in at 4 am to tell me he was still at 100. It could have been anything, but we're glad it's gone now. Stay away, fever!

We also got the rest of Dakin's genetic testing back today--it took forever. We sent the blood sample April 4th of 2008!! Oh well. That's what you get when you have a random disorder. Anyway, it would seem that Dakin does in fact have 2 mutated copies of his IGHMPB2 gene, but the mutations are heterozygous--the first one was a substitution of an amino acid, and the second was a gross deletion of some exons. Our Geneticist says this could mean we are both SMARD carriers, but with the large deletions it could possibly be a first generation mutation, which would mean only one of us is a carrier. We have to get our testing done now to see what the whole story is, but it won't take nearly as long. 2-3 weeks.

Lastly, and sadly, we were heartbroken to learn that little Beau (one of Dakin's SMA friends) finished his battle with SMA yesterday. Our prayers are with his family. Please, if you have not taken a moment to sign the petition at www.petitiontocuresma.com, please do so for Beau and his mourning family. We must must must beat this disease.

Thursday, April 23, 2009

Well, it's been an interesting day. We took Dakin to the orthopedist this morning, with happy results--his knees and hips look great, which PT was concerned about since he flings his legs up and hyperextends his knees. His back is starting to curve a little, of course due to the muscular weakness, so we're going to adjust his chair and that will help with that.

Tonight he started running quite a high fever for him (101.5). We discovered that he is currently pushing two teeth, which would account for the fever, but he just didn't look ok, you know? So we're keeping an eye on him for tonight and we are hoping that this doesn't result in a trip to Children's. Keep your fingers crossed.

Saturday, April 18, 2009

My computer evidently decided to throw a hissy fit the last few days. So we're back, and with videos!! Before the fun stuff, the news: Dakin has been off and on with 02 at night--again, the weather here has been up and down. But he's good other than that.

So here we go! Enjoy! This first one is Dakin enjoying being a boy. Sorry about the camera shaking--I was laughing so hard I couldn't help myself.

Tuesday, April 14, 2009

Soooooooo...it's tornado season here in East Texas. And with tornado season comes--you guessed it--bad bad weather. The other day we had a monster of a storm blow through here, and now the mold count is sky high. As a result, Dakin has been on oxygen the last two nights. There's nothing else wrong, no fever, no yucky secretions. Just a lower sat than normal. I am reeeeeeeeeally hoping for a good, 02 free night tonight, but we'll see. Nurse Prac said to just ride it out. That's tough for me, but I guess I have to acknowledge that even I have no control over the weather...

Sunday, April 12, 2009

Busy weekend! On Saturday we headed to the Easter Egg Hunt at church. Dakin was pretty wary of the proceedings--he's not used to large groups, especially large groups of small children making a lot of noise. But we gathered some eggs anyhow--you can see how thrilled he was with the whole thing...

Thursday, April 9, 2009

Today, one whole year ago, Dakin was released from Baylor Our Children's House to come home!! I can't believe it's been an entire year. He has changed so much!

When we got home, Dakin was on breathing treatments every 4 hours, now we're every 8.

Dakin had a feeding tube, and now it's out (at least for the moment....)

He was almost 13 lbs on release, now he's 22.

I'm not sure how much he has grown, but it seems at least a foot and a half...

When we got home, we had to wear a pulse oximeter all the time. Now, it's just when he sleeps.

Vent settings were at a breathing rate of 12, PEEP of 7, pressure control of 20, and pressure support of 18(I think). Now he's only on a rate while asleep, his PEEP is at 5, PC is off except when he's asleep, and his PS is at 13!!

Now, we have lost some ground--he can't sit up independently anymore and he has muscle weakness, BUT I think we should focus on the positive. Respiratorily, he is doing amazingly. He is getting stronger with breathing every day.

Oh, this is also our day to celebrate an entire year of being hospitalization free!! (Though I have to admit he was in for a few days for an abcess, but here in East Texas they freak out when they see a baby on a ventilator, so they hospitalized him. But it doesn't count!)

We love you so much, Dakin! We are hoping for another whole year hospital free!!

Monday, April 6, 2009

We had a few changes today--we moved Dakin's pressure support and PEEP settings down on his ventilator. I couldn't tell you what the pressure support does, but the PEEP helps keep his lungs open when he breathes out. Moving them down is good--it's a movement toward possible vent weanings and coming off the vent for a little bit (what? dare we hope??).

He did well with it today--didn't seem lethargic or crabby. Tonight, however, he is not keeping his oxygen saturation up at the beautiful 98-100% where he usually is--he's sitting 96-ish. So I'm running a Xopenex treatment in the hopes of bringing his sats up. We'll have to see. It usually takes him a few days to adjust.

He is doing better with eating (I'm not sure if I blogged about the hunger strike that he's had going on: he decided it was way more fun to spit his food out than to swallow it), and by better I mean that he's at least taking solids again. We had pulled them and let him concentrate on the liquids since he gets his caloric necessities from his milk. But he happily--and without a fight--ate a cup of pudding for dinner. Hurrah. I'm tired.

Friday, April 3, 2009

Is 'orneriness' even a word? Well, if it isn't, then it should be--with a picture of Dakin right beside it in the dictionary. He was being so cute tonight before going to bed--hiding his face behind the orange washcloth, playing hide-and-seek. But of course, when I got the camera, he decided it was way more amusing to throw the cloth around. So here's the result:

Thursday, April 2, 2009

Fortunately, it seems that yesterday's little episode was nothing more than that--an episode. No sign of fever, just a little fussiness. So that's good news. Dakin had a pretty good day--he wasn't thrilled with OT today; all he wanted to do was turn book pages while she was here. It's still good exercise for him, but I was hoping he would be interested in the cool alphabet toy she brought--we have great therapists who are always thinking up new things for him. He just wasn't having it today, I guess.

Wednesday, April 1, 2009

Well, we're hoping it's a joke, anyhow. He is running an inexplicable fever, higher than a teething fever. He's acting fine, and there's nothing strange in his lung secretions. So we'll just have to wait it out and see. I'm hoping it's nothing and will be gone by tomorrow. I refuse to have been Germ Nazi all winter to have him get sick NOW. NO WAY. I've already informed him that he will not be getting sick. (Keep your fingers crossed.)

I've given up on Wordless Wednesday, since I always seem to be commenting on the pictures, so I'm switching to Wordful. This is Dakin and Daddy when Dakin was about 6 months old.